It has officially begun!! Did ya hear me screaming for joy where you live? Yup that was just me!! lol
Many more to follow!!!
Blessings and Hope!!
Category: Hope
The Bathroom saga – It’s starting!!!
It’s finally happening!!!!
Bobbi, the woman at my hubbies work who is the MS walk go-to girl for my team has a fab fiance, Tom. He is a contractor and does construction for movies etc.
He came out and measured and said he will get me my bathroom!! woot woot
To add to how amazing he and Bobbi are, he is not charging me any labor. Rog and I will go get all the materials for the job and he and Rog will gut the bathroom. Tom is then going to prep the bathroom for the tile.
Then, one of his guys who does tile will be coming out and adding the handicapped bars, shelves, built in fold up shower chair, etc and putting in the tile. We will pay labor for him. Which is all good.
I’m defiantly going to get or do something nice for Tom and Bobbi for the free labor. That is an amazing gift to me.
I am so excited. I’ve been for so long for this and now it is happening!!
Thanks so much to the fabulously 40 ladies and Universal for your help in making this dream a reality!!
Here is my bathroom now:
Blessings and Hope!!
Multiple Sclerosis: Hope on the Horizon
Is this the medication I’ve been waiting for? The one to give me hope?
In a nutshell, this medication helps you regain leg strength. Click on Ampyra above for the full description of this medication.
My MS counselor told me about a woman with Secondary Progressive MS who is taking this. She is walking again. At this point she is re-learning how to walk. Funny thing is you do forget how to walk. When I used to use my walker I had to remind myself how to move my legs right. So, it seems this medication may work for all types of MS. I have not heard any stories for Primary Progressive, so maybe I can be the first!
Now, I do not expect miracles. Even getting back some leg strength to be able to transfer easier would make my day. Hell being able to get into bed on my own would be amazing!! So, I have a call in to my Neurologist. I am hoping he will call me in a scrip for it. We have talked about before, but I needed to do my own research on it first. This time I am not going to let side effects cloud my decision. If I get any, I will discontinue using it.
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Now, here’s the ‘nothing comes easy for me’ part. My left knee hyper-extends 20 degrees backwards. This cause lots of pain and torn meniscus issues. I had surgery some years ago to fix the tear, but last year was told it was torn again. I have not had surgery as it will keep happening if they do not fix the problem causing it… the hyper-extension [ligaments in the back of my knee are shot].
Problem, no orthopedic will do it. Reason, I have MS and am in a wheelchair so why. The insurance companies will not cover a knee replacement on a cripple. So, if I get leg strength back, what will it matter as my left leg will hinder walking for me. Now they have offered me braces. Have you ever worn a knee brace to stop hyper-extension? They are bulky and they hurt. Thanks, but no thanks. Since I’m not some sports figure I guess they figure why bother. Well I’ll tell you why…
I deserve quality of life just like anyone else. I deserve the same surgeries for this problem just like anyone else. One sports orthopedist told me that this surgery might keep me down, maybe six months, unable to move much. I about pissed myself… REALLY like that will be a big change for me. The end result might be I am able, with the Ampyra to walk again, even if I still need walking aids. I held myself together and when we left that guy and got in to the car, I cried. It was the same from the doctor that did my knee surgery.
Why doesn’t anyone give a shit about us? Why are people with disabilities treated like second, shit third class citizens? Why don’t we deserve the same chances? I’m 46 years old, I have many years left, why won’t they help me?
I am going to go back to my knee doctor once I start the Ampyra. Maybe if there is progress and he sees progress he will re-think the surgery. Oh, I have some swamp land to sell you too… notice my subtle sarcasm! rofl
I am the squeaky wheel kind of girl though. And this will end up being my new project I’m sure. Wait’ll they get a load of me…
Blessing and Hope!
A Juicer day..
We played with our new Breville Juicer today. We made a drink using 5 small oranges, 1 mango, 1/2 cantaloupe, and 3 tblsp of greek yogurt. We got 4 glasses, good size out of it. It was yummy. Even the kids liked it. We got ours at Bed, Bath and Beyond using one of my many 20% off coupons. I love that store. Thanks again to my sm Cheryl!!
Clean up is a breeze. Even I can do it!! lol
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Tonight is the 3rd season premiere of True Blood! I am so excited. Eric [Alexander Skarsgård] can bite me anytime!!
Can this Sunday get any better?? Well, yes it can… steak for dinner!! Weeeeeeeeeeeeeeee
Blessings and Hope!!
Clarification…
No, for those who have asked via email, I’ll never become one of those ‘shiny-happy-people’!! ROFL
Not that being a ‘shiny-happy-person’ is bad, but it’s just not me. There will still be days when I want to scream and whine, I’m sure, but hopefully not as much. I do kind of think that ‘shiny-happy-people’ must be a little off though. I mean really, how can anyone be that way ALL the time. Everyone at some point has had a ‘bad’ day. Well, maybe if you are medicated and have no clue of the world around you it may work. hmmmmm Might be a plan. Bellevue hospital maybe? Think about it, room and board, food fixed for you, linens changed, any and all meds you may need, can it get any better than that.
But, seriously… I still look at my wheel-chariot and feel bummed every day. I’m just going to try and not let the feelings take me over. Not being able to walk is so frustrating for me. My mind feels like I can just get up and get moving, but my body says, “NOPE!”, loudly. This is something I will need to work on and learn to cope with. It will take time, but I will get through it. Sometimes when I watch movies, see people walking, I can feel my eyes tear up and the moisture roll down my cheek. Funny thing is at that moment I do not even realize it until the taste of salt hits my lips. The fatigue, the DDD, the tummy and colon issues, and all the rest, even the incontinence are not what make me blue, it’s losing my ability to walk and have the strength I once had. I do not think I have ever realized where the pain comes from deep inside. I’m trying to look and see my triggers and recognize them so that I do not lose myself again.
I’m hoping by working on my legs with the pedaler, and my arms with the hand job [shake weight], that I can get a bit of strength back. I decided on a 2 day on 1 day off plan. 2 days of the exercise and 1 day off. I thought long and hard about when I fell of the wagon, so to speak, almost 2 years ago. It was when I got to feeling better I over did everything. It caught up with me and I crashed. So this time I am going to watch and learn my limitations. Kind of like, on the third day she rests!! lol
Hope your today was a good one!
Blessings and Hope!
Hope Floats
On Saturday [yesterday] got my butt out of bed and got showered and got moving. Did my pedaler for 15 mins, while starting my book ‘T is for Trespass’, and then got Roger going so we could go together to Sam’s Club and Wally World. This used to be our ‘thing’ we did together every weekend up until a couple months ago. I stopped going. I would take my meds and veg out and send him on his own. Part of my new ‘me’ is to get back to the things I left behind. We always have fun together even if it is grocery shopping. I finally got him moving and went on our Saturday outing together again. It felt so good to get back to life.
Roger used to work out 3 times a week, and go MX riding on Sundays.
He stopped all that the same time I gave in to my MS. I should have seen the signs, but I was to caught up in my poor me, pour me a drink attitude. I’m hoping that now, he will get back to it. Our house was much more calm when we were both in our ‘right’ minds! 😛
Hope you all have a fabulous Sunday. I am off to ‘pedal’ for a bit!!
Blessings and Hope!!
Epiphany? Wicked wake up call…
It all started with an email from my hubby that had me in tears. I knew it was time to take it, my life, back from my illness[s]. He is suffering emotionally and physically due to my illness. I finally realized that once upon a time, I said I would not let my disease[s] take me over. I realize now, I have done just that. I have literally stopped trying and have been letting it all take me away from me. Almost like I am laying down to die. The ‘why bother’, the ‘who cares anyway’. This person is NOT me! I am and have always been a fighter. I do not give up on things. It may take me a bit to finish certain things in my life, but I will finish them in the end. I am no quitter.
I have Primary Progressive MS, spastic colon, incontinence, degenerative disc disorder, prone to anxiety attacks, depression [sometimes severe], esophagus issues, pain, tremors, and too many little things that come with all this to mention. BUT, I can work with some of these. Food is my biggest enemy. Gluten, soy, dairy, certain veges and seed items are bad for Autoimmune disorders. They can cause terrible problems for me. Processed foods, and fake sugars and fake fats are bad as well. I know this and almost 2 years ago I changed my lifestyle and cut out the crap foods and learned to eat the right way. No supplement drinks, pills, or ‘fake’ foods. I lost over 20 pounds and felt great. No, it did not make me walk again, no it did not cure me, but it sure helped my overall emotional self. My stomach issues all about disappeared. My fatigue lessened. I still had my not so great days, bu they were much fewer.
So WTF happened?? I gave up. I gave in. I got down one day and let it take me over and went back to my old habits. Gained the weight back and all the good things that happened faded. I could not find my way back. Now, I am not saying this was a bad thing or even that I won’t have bad days again. I am saying that I am going to work at getting ME back. Fighting this wicked disease that has crippled me and do everything I can TO find my way back.
And it all began from the email from my hubby. He loves me, completely and true. But, he started losing himself. Sadness and fear overtook him. The worry for me was killing him. I was letting my disease kill me slowly. I was not seeing what it was doing to him and my children. I was lost in my MS. I knew as I read that letter that I needed to take a stand against my MS. I got up and got my ass over to me motorized pedaler and got to work. I lifted my small weights and am slowly getting back to eating the way humans are supposed to eat. Not the way the BS food industry says we should eat. They do not care about us, they care about selling shit food to us and making money off of us. NO more.
Will I slip? Will I have bad days ahead? Will I lose myself again? Maybe! But that’s ok. It’s all about baby steps.
Baby steps here…
to be continued…
The Padded Room featuring Carol Urban!
This week’s guest is Carol Urban. She will be sharing her story of courage and strength in the face of adversity.
Carol was diagnosed with Stage III colon Cancer September 2007.
We hope you join us for this amazing story of Hope!
http://www.blogtalkradio.com/rlrn/2010/05/13/the-padded-room–unlocked-and-unplugged
A Life without hope is like living behind the locked doors of a padded room. Ruby and Tracy want to help you find the hope needed to unlock those doors.
Two crazy girls, passionate about being real in the midst of their own real-life health and emotional challenges, are here to encourage you in yours.
**Disclaimer** Aside from being certifiable, the ladies from The Padded Room hold no certificates, licenses nor are medical professionals in any area related to mental or physical issues. Please seek professional treatment if you have questions or concerns about your health.
Blessings and Hope!
The Padded Room – All About Meeeee!!
Show is at 1PM Texas Time!
Ruby and Keith will be interviewing me today on living with Progressive Multiple Sclerosis. [click in pic to take you to the show]
Our show is made possible by the wonderful founder of The Real Life Radio Network, Laurie Zieber!
We hope to ‘see’ you there!
Blessings and Hope!
The Padded Room – Living with Scoliosis
Our show this Thursday is a must ‘hear’! We will be talking with Ruby Cantu, co-host of The Padded Room.
http://www.blogtalkradio.com/rlrn/2010/04/15/the-padded-room–unloc…
Ruby has suffered with severe Scoliosis for most of her life.
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Scoliosis:
Definition
By Mayo Clinic staff
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Scoliosis:
Definition
By Mayo Clinic staff
Scoliosis is a sideways curvature of the spine that occurs most
often during the growth spurt just before puberty. While scoliosis can be
caused by conditions such as cerebral palsy and muscular dystrophy, the
cause of most scoliosis is unknown.
often during the growth spurt just before puberty. While scoliosis can be
caused by conditions such as cerebral palsy and muscular dystrophy, the
cause of most scoliosis is unknown.
Most cases of scoliosis are mild, but severe scoliosis can be disabling.
An especially severe spinal curve can reduce the amount of space within
the chest, making it difficult for the lungs to function properly.
Children who have mild scoliosis are monitored closely, usually with
X-rays, to see if the curve is getting worse. In many cases, no
treatment is necessary. Some children will need to wear a brace to stop
the curve from worsening. Others may need surgery to straighten severe
cases of scoliosis.
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As shown in the next photos, our Ruby, needed surgeries.
Keith Zieber, our fabulous producer will be helping me, Tracy, interview Ruby!
Ruby is in the ‘hot seat’ and we hope to see you there!!
Blessings and Hope!
Making it Through the Rain 
